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My dad who lives abroad was diagnosed with advanced pc. No idea what to do

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User
Posted 15 Feb 2018 at 12:46
Hi

I have been reading your posts and information whole week.

This week changed our lives forever. My dad who lives in Pakistan has been

Diagnosed with advanced prostate cancer after losing a lot of weight . He is 75 years old. His PSA is 92 and he has extensive skeletal metastatic that has spread to his skull, spine,rib cage, joints and pelvic bones. Have any of you seen any case like this here? Is there any hope ?

User
Posted 19 Feb 2018 at 17:59

A big thank you to all of you for sharing your personal experience of chemo. Thanks to your quick response yesterday , my sister who is my dad's main carer at the moment knew the right questions to ask the consultants today.
They have assured us that chemo for prostate cancer has a lot less side effects and it actually helps with pain than causing pain.
Wish you all the best against pc

User
Posted 16 Mar 2018 at 21:01
We have already amended the filter to do this.

 

 

User
Posted 17 Feb 2018 at 21:22

Khan, it must be awful trying to choose when you also have to consider cost. I am not sure whether this will help or make things more difficult but the following might help clarify your thoughts:

- in the UK until recently chemo was only given to men in the final stages of the disease because chemo doesn't kill prostate cancer
- however, new research showed that the chemo makes hormone treatment more effective for longer
- abiraterone is fairly new and was developed for men who had already been on hormone treatment but the cancer had become hormone resistant
- very recently, newly diagnosed men have been trying abiraterone much earlier than before

Perhaps chemo first will make the very expensive abiraterone work better for your dad and will therefore be worth the money?

There are many different chemotherapies and many men find the prostate cancer chemo not too bad - some even manage to carry on working full time. If he was very poorly on it, he would be able to stop.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2018 at 14:54

The hormones should bring your dad’s PSA down just as quickly - that is because they are being starved.

Chemo for prostate cancer is not painful in itself. Some men get very sore mouths (sucking ice cubes or pineapple can help) or everything starts to taste of metal and some men get upset tummy or hand / foot problems but the main thing is to avoid infections.

The pain of bone mets can be very much worse than the pain of treatment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2018 at 22:29

Hi Khan

My 61 year old husband had taxotere chemo last year for metastatic prostate cancer (PSA 248 at diagnosis) and had absolutely no side effects apart from an increased appetite due to the steroids (prednisolone) that he took whilst having chemo.  Chemo in itself is not painful and it reduced his PSA to 3. At the end of his treatment he was completely pain free and well enough to go on holiday.  As Lyn says, the main thing it to avoid the risk of infection while having treatment as it can compromise your immune system and any treatment is infinitely better than the pain caused by bone mets.

Sending caring thoughts to you and your family.

 

 

User
Posted 18 Feb 2018 at 22:44

From NHS choices :-

Chemotherapy

Chemotherapy is mainly used to treat prostate cancer that has spread to other parts of the body (metastatic prostate cancer) and which is not responding to hormone therapy.

Chemotherapy destroys cancer cells by interfering with the way they multiply. Chemotherapy does not cure prostate cancer, but can keep it under control and reduce symptoms (such as pain) so everyday life is less affected.

The main side effects of chemotherapy are caused by their effects on healthy cells, such as immune cells. They include infections, tiredness, hair loss, sore mouth, loss of appetite, nausea and vomiting. Many of these side effects can be prevented or controlled with other medicines, which your doctor can prescribe for you.

Barry
User
Posted 19 Feb 2018 at 11:08

Hi Khan,

I had 6 cycles of Docetaxel which finished this time last year. I had a few of the side effects including fatigue, changes to nail structure, some hair loss (thinning really) and a metallic taste. Whilst none were pleasant they weren’t debilitating and I can honestly say that at no time did chemotherapy cause me any pain. If you want to ask any personal questions just reply here. I’ll be happy to answer.

All the best

Dave

User
Posted 16 Mar 2018 at 09:20

Hi Khan,

This is probably one best answered by your dad’s doctors. I was advised that it is a downward trend that is important and after one blood test that is too early to tell. I can say that I am on Decapeptyl and that my first blood test after I started went from a diagnosis PSA of 67 to 10 and then dropped steadily when Docetaxel was added to the mix but when you read enough posts on here you will see that everyone is different.

Dave

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User
Posted 15 Feb 2018 at 14:38

Hi Khan, it depends on what treatments are available in Pakistan and whether they have to be paid for. In the UK he would probably be put on a hormone treatment that stops testosterone from being produced, and he might also be offered chemotherapy which research is suggesting makes the hormone therapy more effective. However, some of the hormone treatments are very expensive and I am aware that in some Asian countries they are more likely to remove the testicles surgically.

Whether they remove the testicles or give him hormones, the purpose of stopping testosterone is to starve the cancer - this makes the tumours shrink and the cancer cells can't reproduce. Some men live for many, many years even with widespread bone mets while others do not do so well. Can you find out what treatment plan he is being offered?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Feb 2018 at 16:25
Hi

You were absolutely right .cancer medicine are terribly expensive as we are finding out. The oncologist has started the treatment with LHRH Agonist with Androgens blockers and Bishosphontes for bone thinning.

Now the oncologist wants us to decide between chemotherapy in the form of Taxotere or Abiraterone, which is very very expensive in pakistan. We don't make it in the country . Indian manufactured Zytiga or Abirateron costs nearly half the one made in UK or Canada.

The trouble is we have seen people on chemotherapy in a lot of pain and agony. And we don't want dad to go through that much pain. But with imported Abirateron , we are not sure how long we can afford it.

Really really upset about the whole situation.

User
Posted 17 Feb 2018 at 21:12

Moderators - why is the name of the country being blocked???? Seems a bit over sensitive :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Feb 2018 at 21:22

Khan, it must be awful trying to choose when you also have to consider cost. I am not sure whether this will help or make things more difficult but the following might help clarify your thoughts:

- in the UK until recently chemo was only given to men in the final stages of the disease because chemo doesn't kill prostate cancer
- however, new research showed that the chemo makes hormone treatment more effective for longer
- abiraterone is fairly new and was developed for men who had already been on hormone treatment but the cancer had become hormone resistant
- very recently, newly diagnosed men have been trying abiraterone much earlier than before

Perhaps chemo first will make the very expensive abiraterone work better for your dad and will therefore be worth the money?

There are many different chemotherapies and many men find the prostate cancer chemo not too bad - some even manage to carry on working full time. If he was very poorly on it, he would be able to stop.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2018 at 12:23

Thank you so much for your reassuring words. Means a lot to hear from someone who has some knowledge .
My sister is going to consult 2 more oncologists about dad's reports. Maybe they can help us choose which treatment he needs first.
The personal experiences I am reading on this website about chemo are very encouraging. Yesterday I was reading about someone who had a PSA 4000 and had mets in the bones in exactly the same places as my dad. He had HT jab and chemo twice and the PSA was down to 0.4 . I asked him about his experience of chemo , if it was painful ? But I cannot see my post on his page. Now I am wondering if I am allowed to ask personal question like this?
Any information I get here is really valueable and really appreciated .

User
Posted 18 Feb 2018 at 14:54

The hormones should bring your dad’s PSA down just as quickly - that is because they are being starved.

Chemo for prostate cancer is not painful in itself. Some men get very sore mouths (sucking ice cubes or pineapple can help) or everything starts to taste of metal and some men get upset tummy or hand / foot problems but the main thing is to avoid infections.

The pain of bone mets can be very much worse than the pain of treatment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2018 at 22:29

Hi Khan

My 61 year old husband had taxotere chemo last year for metastatic prostate cancer (PSA 248 at diagnosis) and had absolutely no side effects apart from an increased appetite due to the steroids (prednisolone) that he took whilst having chemo.  Chemo in itself is not painful and it reduced his PSA to 3. At the end of his treatment he was completely pain free and well enough to go on holiday.  As Lyn says, the main thing it to avoid the risk of infection while having treatment as it can compromise your immune system and any treatment is infinitely better than the pain caused by bone mets.

Sending caring thoughts to you and your family.

 

 

User
Posted 18 Feb 2018 at 22:44

From NHS choices :-

Chemotherapy

Chemotherapy is mainly used to treat prostate cancer that has spread to other parts of the body (metastatic prostate cancer) and which is not responding to hormone therapy.

Chemotherapy destroys cancer cells by interfering with the way they multiply. Chemotherapy does not cure prostate cancer, but can keep it under control and reduce symptoms (such as pain) so everyday life is less affected.

The main side effects of chemotherapy are caused by their effects on healthy cells, such as immune cells. They include infections, tiredness, hair loss, sore mouth, loss of appetite, nausea and vomiting. Many of these side effects can be prevented or controlled with other medicines, which your doctor can prescribe for you.

Barry
User
Posted 19 Feb 2018 at 11:08

Hi Khan,

I had 6 cycles of Docetaxel which finished this time last year. I had a few of the side effects including fatigue, changes to nail structure, some hair loss (thinning really) and a metallic taste. Whilst none were pleasant they weren’t debilitating and I can honestly say that at no time did chemotherapy cause me any pain. If you want to ask any personal questions just reply here. I’ll be happy to answer.

All the best

Dave

User
Posted 19 Feb 2018 at 17:59

A big thank you to all of you for sharing your personal experience of chemo. Thanks to your quick response yesterday , my sister who is my dad's main carer at the moment knew the right questions to ask the consultants today.
They have assured us that chemo for prostate cancer has a lot less side effects and it actually helps with pain than causing pain.
Wish you all the best against pc

User
Posted 15 Mar 2018 at 18:53

Hi
My dad is being treated by LHRH agonist and androgen blockers plus he has been taking Abiraterone for a month. His Psa is down from 92 to 77 this month. I was expecting it a lot lower than than this. The posts I have been reading here mention Psa levels dropping to single digits.
Do you guys think I am being over anxious or is it normal ?
Thanx

User
Posted 16 Mar 2018 at 07:24
It will because of the beginning “p***” as this is seen as a racial slur
User
Posted 16 Mar 2018 at 09:20

Hi Khan,

This is probably one best answered by your dad’s doctors. I was advised that it is a downward trend that is important and after one blood test that is too early to tell. I can say that I am on Decapeptyl and that my first blood test after I started went from a diagnosis PSA of 67 to 10 and then dropped steadily when Docetaxel was added to the mix but when you read enough posts on here you will see that everyone is different.

Dave

User
Posted 16 Mar 2018 at 18:47
Originally Posted by: Online Community Member
It will because of the beginning “p***” as this is seen as a racial slur

Yes I realise why but it is ridiculous and shows how basic the moderation of this site is. It isn’t racist if it is the actual name of the country!!!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Mar 2018 at 20:07

There is an automated bad word filter built into the forum software platform which has picked up on the first few letters of this word and has asterisked them.

Best wishes,

Carol

Digital Manager

Prostate Cancer UK

 

 

User
Posted 16 Mar 2018 at 20:41

Carol, can it not be reset so that it recognises the whole word as different to the racial slur? To filter out part of the name of a country could be seen as just another form of racism - or political correctness in its most damaging form. How terrible for Khan that the place where his dad lives is seen as a bad word!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Mar 2018 at 21:01
We have already amended the filter to do this.

 

 

User
Posted 16 May 2018 at 11:50

Hi
My dad was diagnosed with prostate cancer in April 12th with extensive bone mets. He is on hormone therapy since then - zoladex and bicalutamide. They have prescribed a biphosphonate for bone pain and have asked to get PSA test done after 3 months. I am concerned about such a long waiting period.

At present I am worried for him to loose almost 3 kg of weight in 3 weeks while already on hormone therapy !
I think I should go for a second opinion.

User
Posted 16 May 2018 at 13:48

I don't know what you think a second opinion could offer?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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